An avid equestrian and educator based in Virginia, Karen Del Vecchio was diagnosed with Ehlers-Danlos syndrome in 2009 after years searching for a diagnosis that explained her symptoms. Since her diagnosis at the Johns Hopkins Connective Tissues Disorder Clinic, she has worked to find ways to manage her symptoms while still maintaining an active lifestyle. Karen enjoys working with her students, riding and caring for her two horses, Cherry and Spotty, and connecting with others in the rare disease community through her writing.
I’ve been thinking lately how awareness of Ehlers-Danlos syndrome (EDS) has changed over the years. Growing up, I’d never heard of it. The first time I did was as an adult, when a doctor at Georgetown University, where…
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